Thanks Shep -- It's encouraging to know that it will start to improve his energy levels but I wish it would do it faster.
And thanks, Sunrise. We'll stay on top of his numbers -- I just hate watching him deal with all of this and there's nothing I can do to help. Actually I probably make it worse by worrying so much.
Sunrise747 said
May 14, 2012
Procrit does work wonders but it is also nasty stuff that you want to be very careful taking. The FDA has issued several "black box" warnings related to Procrit. That is basicly what they do with a drug that has the potential to be very dangerous if not taken very carefully. My understanding (and personal experience) is that you want to stop taking it anytime your HGB rises above 11 or so. Ask your doctor.
Shep said
May 14, 2012
Hi Elizabeth--the Procrit takes 2- 6 weeks to feel the full effect. I started it probably 5 weeks ago and have been starting to have more energy. The day of the shot is filled with aches and pains--but it has made a difference. Hang in there--it just takes some time.
elizabeth said
May 14, 2012
This is so confusing and scary. My husband had his riba cut in half after week 4 because of low RBC and had 2 units of blood later that week. He felt pretty good for a few days. Now it's 10 days later and he had the first shot of procrit last night and today doesn't have enough energy to stand up. Is this typical? Why can't he just get transfused more often instead of taking this stuff that makes him feel so bad? And now reading about the stroke risk is another worry since he had a stroke 2 years ago.
The other worry is the reduced riba. He was UND at week 4 and I'm scared to death the reduced riba so early in tx will open the door to let the dragon back in.
Thanks for all of the info and this great support group. It's still frightening, but it would sure be worse without all of you!
innerview said
Mar 24, 2012
I've been on reduced Riba (800) since the end of week 3. Here in Sweden procrit is off the table as far as I understand it. They reduce Riba until you stabilize. They will do a transfusion as a last resort. I keep asking about increasing my dose again, but the nurse says not to worry about it, i'm doing fine. I go back again Monday for lab because blood dropped a couple more points.
Like Alan said, I worry about being on reduced Riba from such an early stage. Although the nurse says that my absorption is right where it should be. So I just breathe in, trust, and hope for the best.
Also, forgot ... I am also on reduced Interferon.
Wishing you ALL health and healing!!!!
-- Edited by innerview on Saturday 24th of March 2012 04:46:02 PM
LanaiSurferGirl said
Mar 23, 2012
Great News....my brother is also undergoing triple tx with incivik and is undetectable after 4 weeks! :) My mom has it too and the theory is that she contracted it through a blood transfusion in 74 and passed it to us at birth but we will never know.
Alan, nice to see someone else who is going 36 weeks. I feel the same way...it is much easier than it was 12 years ago for me doing 3 shots per week trying to keep up with my college classes and activities and after being off incivik this is the easy part.
Shep, I like how we all grow close together too. It would be fun to plan a weekend and invite everyone on the forum so it would be like a real life forum. We could plan it and get group rates at a resort...i will post and see if anyone is interested. :)
aloha,
Meghan
Shep said
Mar 18, 2012
Meghan, Alan and All This is starting to feel like family--I just don't know what I would do with all you guys! This is so hard but everyone here makes it easier--through support, info, experience and just plain being there. Thank-you so much!
news said
Mar 18, 2012
Meghan,
I am already scheduled for 36 weeks because I was not quite undetectable at 4 weeks. So that is one more reason not to worry so much about the reduced ribavirin doseage. I just can't help worrying about it. I have worked so hard and been through some pretty tough days. I'd hate for it not to be effective. But as Isiscat said (I am starting to love her), I may have already won this fight. I guess I should enjoy these reasonably comfortable days and stop being such a worry wart. I am paying a damn good doctor and a fabulous nurse practitioner, and they have forgotten more than I will ever know about this dragon, so there is no need to fret.
I wish there was some way a bunch of us that started about the same time, including those who had to stop or take a break, could get together at some peaceful place and tell tales and laugh about all this when it's done. This forum is starting to feel like family. It would be a hoot to sit around a pool on a Summer night. But then, by the time we all get our SVR, it will be Winter again.
Alan
LanaiSurferGirl said
Mar 18, 2012
Alan...I grew up in Texas so am familiar with the language there and in Cajun land :) I like how as your hemoglobin was rising you reduced your dosage of it and raised the dosage of ribavirin...I will call my doctor about that on Monday when I request a blood test for next week.
Thank you all for the suggestions! I was undetectable at 12 weeks and we talked about extending my treatment to 36 weeks if I can tolerate it because there are unkowns about the dose reductions. I would rather go an extra 12 weeks and put my mind at ease rather than be worried about if the treatment will be successful. Since being off of the telepravir I have been feeling so much better but still have to pace myself. If I wear myself out then I get the amplified side effects of chills then night sweats but only had that a few times :)
Those of you who are starting procrit or have just started, yes read up on all of the info and know what you are putting into your body. It has been beneficial for me but like I said, I just don't want to take it if I don't need it.
Kelly, I eventually found what you found about the stroke/heart attack/blood clots and want to be on the safe side...especially since we have so much medication in our systems anyway. :)
Kelly and Shep...good luck with the procrit. It took a while for it to kick in for me (manufacturer says 2-6 weeks) and my hemoglobin kept dropping after telepravir and while on the procrit so doc did this. So, keep your chin up even if blood tests don't show immediate results. Although, keep in mind some people can have an adverse reaction to the procrit that makes them even more anemic.
aloha,
Meghan
kiwi said
Mar 18, 2012
i got to go to lousiana last january. was awesome.. nola... and gulf coast ms, up to ms, clarksdale,natchez, little rock, memphis, and back down to jackson... i had an absolute ball i loved the south. ate lots of fried chicken, fried ochre, and some gator wings... and watched a saints game at Pat O'Briens.... and i sure had a hard time understandin some of em southern accents. but it was funny, as soon as this kiwi opened her mouth ''ya'll aint frim round here are ya''?""
haha. cool..
Isiscat2011 said
Mar 17, 2012
Isiscat2011 wrote:
If it is any consolation to you, Vertex did a clinical trial in Europe, called PROVE 2, where patients were given the triple therapy for only 12 weeks TOTAL and 62% of them achieved SVR.
Here I go responding to myself again.
Another way of looking at this is if you are UND at 12 weeks then it is more likely than not you have already slayed that dragon. Anything you can do thereafter is only increasing your odds.
Isiscat2011 said
Mar 17, 2012
news wrote:
My main concern now is the risk to my SVR from reducing the ribavirin for so long. I read that many doctors are allowing reduction late in the treatment to help with red cell issues and that there is no affect on success rates. Then the makers of procrit say they have proven that normal riba plus procrit results are much better than reduced riba results. I don't know who to believe.
I know what you mean and it is a shame that the information is not more consistent and reliable when the stakes are so high.
If it is any consolation to you, Vertex did a clinical trial in Europe, called PROVE 2, where patients were given the triple therapy for only 12 weeks TOTAL and 62% of them achieved SVR. (I am assuming these results were based on 80% compliance with riba during the 12 weeks.)
I know these are not the odds anyone is aiming for but even if the riba reduction completely derailed the tx (which is highly unlikely) your odds would still be pretty decent as long as your riba intake was at 80% during the first 12 weeks. The way I see it worst case scenario is 62% and best case is well over 90%assuming tx is completed, and there is no doubt in my mind that you will finish. Perhaps the results will fall somewhere in between overall.
Isiscat2011 said
Mar 17, 2012
Hi LSG: I'm so glad to see you are doing ok and your hgb is up. Your concerns are legitimate and based on the manufacturers own warnings. There is quite a bit of info about this on the web and it generally echos the warnings.
I would ask my doctor this question directly before I proceeded. He did say it was temporary so maybe he has some plan in mind that will not expose you to undue risk. OTOH, docs sometimes make fast and instinctive decisions before they have had time to adequately review the patient's file and think on the problem.
Also, there is usually more than one solution to a problem, so I always ask what my options are, and then ask the doc which option he would choose. If you opt for continuing the procrit then I think your weekly draw idea is an excellent one and there is no reason doc should object to that.
Kellyw said
Mar 17, 2012
Shep, they didn't reduce my RIBA either.
news said
Mar 17, 2012
I had to take three shots of procrit for low hematocrit readings. I did one a week for two weeks, with a reduced (halved) ribavirin dose and things came back.They told me to take the procrit every other week, and I did that once, then they told me stop it altogether. Ribavirin remains at 600mg/day instead of the original 1200. I read that procrit had "caused" stroke, but I don't think that would be the case in this treatment (which btw is still not approved by the FDA).
My main concern now is the risk to my SVR from reducing the ribavirin for so long. I read that many doctors are allowing reduction late in the treatment to help with red cell issues and that there is no affect on success rates. Then the makers of procrit say they have proven that normal riba plus procrit results are much better than reduced riba results. I don't know who to believe.
Alan
Shep said
Mar 17, 2012
Oh Boy--I have just been prescribed the Procrit but it has not arrived yet. I really need to do some research on this stuff. Not looking forward to another shot. They have not reduced my Riba or anything. Thanks for the heads up!
news said
Mar 17, 2012
Isiscat2011 wrote:
Another way of looking at this is if you are UND at 12 weeks then it is more likely than not you have already slayed that dragon. Anything you can do thereafter is only increasing your odds.
I like the way you put that. It could be that everything I do after twelve weeks (since I was UND at 12) is "to boot" (Texas) or "lagniappe" (Louisiana), both words meaning "a little something extra". But since I don't know for sure, I keep trudging along. But it helps keep me from worrying so much about the reduced riba.
Alan
* to boot - something to put in the trunk (sometimes called the boot)
* lagniappe (lan-yap) An extra gift or gratuity given for no reason
-- Edited by news on Sunday 18th of March 2012 02:18:56 PM
Kellyw said
Mar 17, 2012
I just took my 3rd shot of procrit tonight . I heard dangers are clotting which could be really bad (stroke/heart attack ) but of course low percentage. Had not heard to stop when normal or dangers if you don't but it does make sense if you make too many red blood cells you might get clots or other issues. I have Been up and down. Worse with really low rbc , better now but still pretty dull and joyless. Hope you feel ok. I'm slogging thru, beginning to really yen for the end of this. 3 more months.... Guess not bad, half way done.
LanaiSurferGirl said
Mar 17, 2012
Hey! I have been on Procrit for 8 weeks and my hemoglobin is now at 10.4. I was on a reduced ribavirin dose and we just increased it from 200mg to 400mg and my doc wants me to stay on procrit temporarily in case the hemoglobin starts dropping again. I am a little nervous because there is warnings with procrit about not continuing it if your hemoglobin goes back to normal.
I am supposed to get a blood test in 2 weeks but am thinking about asking for one next week just incase the hemoglobin is still rising....don't want to put myself in any danger. The manufacturer's website for procrit does not say what will happen if you use it and your hemoglobin is within normal range.
Does anyone know or have you delt with this before?
Thanks Shep -- It's encouraging to know that it will start to improve his energy levels but I wish it would do it faster.
And thanks, Sunrise. We'll stay on top of his numbers -- I just hate watching him deal with all of this and there's nothing I can do to help. Actually I probably make it worse by worrying so much.
Procrit does work wonders but it is also nasty stuff that you want to be very careful taking. The FDA has issued several "black box" warnings related to Procrit. That is basicly what they do with a drug that has the potential to be very dangerous if not taken very carefully. My understanding (and personal experience) is that you want to stop taking it anytime your HGB rises above 11 or so. Ask your doctor.
This is so confusing and scary. My husband had his riba cut in half after week 4 because of low RBC and had 2 units of blood later that week. He felt pretty good for a few days. Now it's 10 days later and he had the first shot of procrit last night and today doesn't have enough energy to stand up. Is this typical? Why can't he just get transfused more often instead of taking this stuff that makes him feel so bad? And now reading about the stroke risk is another worry since he had a stroke 2 years ago.
The other worry is the reduced riba. He was UND at week 4 and I'm scared to death the reduced riba so early in tx will open the door to let the dragon back in.
Thanks for all of the info and this great support group. It's still frightening, but it would sure be worse without all of you!
I've been on reduced Riba (800) since the end of week 3. Here in Sweden procrit is off the table as far as I understand it. They reduce Riba until you stabilize. They will do a transfusion as a last resort. I keep asking about increasing my dose again, but the nurse says not to worry about it, i'm doing fine. I go back again Monday for lab because blood dropped a couple more points.
Like Alan said, I worry about being on reduced Riba from such an early stage. Although the nurse says that my absorption is right where it should be. So I just breathe in, trust, and hope for the best.
Also, forgot ... I am also on reduced Interferon.
Wishing you ALL health and healing!!!!
-- Edited by innerview on Saturday 24th of March 2012 04:46:02 PM
Great News....my brother is also undergoing triple tx with incivik and is undetectable after 4 weeks! :) My mom has it too and the theory is that she contracted it through a blood transfusion in 74 and passed it to us at birth but we will never know.
Alan, nice to see someone else who is going 36 weeks. I feel the same way...it is much easier than it was 12 years ago for me doing 3 shots per week trying to keep up with my college classes and activities and after being off incivik this is the easy part.
Shep, I like how we all grow close together too. It would be fun to plan a weekend and invite everyone on the forum so it would be like a real life forum. We could plan it and get group rates at a resort...i will post and see if anyone is interested. :)
aloha,
Meghan
This is starting to feel like family--I just don't know what I would do with all you guys! This is so hard but everyone here makes it easier--through support, info, experience and just plain being there.
Thank-you so much!
Meghan,
I am already scheduled for 36 weeks because I was not quite undetectable at 4 weeks. So that is one more reason not to worry so much about the reduced ribavirin doseage. I just can't help worrying about it. I have worked so hard and been through some pretty tough days. I'd hate for it not to be effective. But as Isiscat said (I am starting to love her), I may have already won this fight. I guess I should enjoy these reasonably comfortable days and stop being such a worry wart. I am paying a damn good doctor and a fabulous nurse practitioner, and they have forgotten more than I will ever know about this dragon, so there is no need to fret.
I wish there was some way a bunch of us that started about the same time, including those who had to stop or take a break, could get together at some peaceful place and tell tales and laugh about all this when it's done. This forum is starting to feel like family. It would be a hoot to sit around a pool on a Summer night. But then, by the time we all get our SVR, it will be Winter again.
Alan
Alan...I grew up in Texas so am familiar with the language there and in Cajun land :) I like how as your hemoglobin was rising you reduced your dosage of it and raised the dosage of ribavirin...I will call my doctor about that on Monday when I request a blood test for next week.
Thank you all for the suggestions! I was undetectable at 12 weeks and we talked about extending my treatment to 36 weeks if I can tolerate it because there are unkowns about the dose reductions. I would rather go an extra 12 weeks and put my mind at ease rather than be worried about if the treatment will be successful. Since being off of the telepravir I have been feeling so much better but still have to pace myself. If I wear myself out then I get the amplified side effects of chills then night sweats but only had that a few times :)
Those of you who are starting procrit or have just started, yes read up on all of the info and know what you are putting into your body. It has been beneficial for me but like I said, I just don't want to take it if I don't need it.
Kelly, I eventually found what you found about the stroke/heart attack/blood clots and want to be on the safe side...especially since we have so much medication in our systems anyway. :)
Kelly and Shep...good luck with the procrit. It took a while for it to kick in for me (manufacturer says 2-6 weeks) and my hemoglobin kept dropping after telepravir and while on the procrit so doc did this. So, keep your chin up even if blood tests don't show immediate results. Although, keep in mind some people can have an adverse reaction to the procrit that makes them even more anemic.
aloha,
Meghan
i got to go to lousiana last january. was awesome.. nola... and gulf coast ms, up to ms, clarksdale,natchez, little rock, memphis, and back down to jackson... i had an absolute ball i loved the south. ate lots of fried chicken, fried ochre, and some gator wings... and watched a saints game at Pat O'Briens.... and i sure had a hard time understandin some of em southern accents. but it was funny, as soon as this kiwi opened her mouth ''ya'll aint frim round here are ya''?""
haha. cool..
Here I go responding to myself again.
Another way of looking at this is if you are UND at 12 weeks then it is more likely than not you have already slayed that dragon. Anything you can do thereafter is only increasing your odds.
Hi LSG: I'm so glad to see you are doing ok and your hgb is up. Your concerns are legitimate and based on the manufacturers own warnings. There is quite a bit of info about this on the web and it generally echos the warnings.
I would ask my doctor this question directly before I proceeded. He did say it was temporary so maybe he has some plan in mind that will not expose you to undue risk. OTOH, docs sometimes make fast and instinctive decisions before they have had time to adequately review the patient's file and think on the problem.
Also, there is usually more than one solution to a problem, so I always ask what my options are, and then ask the doc which option he would choose. If you opt for continuing the procrit then I think your weekly draw idea is an excellent one and there is no reason doc should object to that.
I had to take three shots of procrit for low hematocrit readings. I did one a week for two weeks, with a reduced (halved) ribavirin dose and things came back.They told me to take the procrit every other week, and I did that once, then they told me stop it altogether. Ribavirin remains at 600mg/day instead of the original 1200. I read that procrit had "caused" stroke, but I don't think that would be the case in this treatment (which btw is still not approved by the FDA).
My main concern now is the risk to my SVR from reducing the ribavirin for so long. I read that many doctors are allowing reduction late in the treatment to help with red cell issues and that there is no affect on success rates. Then the makers of procrit say they have proven that normal riba plus procrit results are much better than reduced riba results. I don't know who to believe.
Alan
Thanks for the heads up!
I like the way you put that. It could be that everything I do after twelve weeks (since I was UND at 12) is "to boot" (Texas) or "lagniappe" (Louisiana), both words meaning "a little something extra". But since I don't know for sure, I keep trudging along. But it helps keep me from worrying so much about the reduced riba.
Alan
* to boot - something to put in the trunk (sometimes called the boot)
* lagniappe (lan-yap) An extra gift or gratuity given for no reason
-- Edited by news on Sunday 18th of March 2012 02:18:56 PM
Hey! I have been on Procrit for 8 weeks and my hemoglobin is now at 10.4. I was on a reduced ribavirin dose and we just increased it from 200mg to 400mg and my doc wants me to stay on procrit temporarily in case the hemoglobin starts dropping again. I am a little nervous because there is warnings with procrit about not continuing it if your hemoglobin goes back to normal.
I am supposed to get a blood test in 2 weeks but am thinking about asking for one next week just incase the hemoglobin is still rising....don't want to put myself in any danger. The manufacturer's website for procrit does not say what will happen if you use it and your hemoglobin is within normal range.
Does anyone know or have you delt with this before?
Thanks & aloha,
Meghan